COTA for Iain H

Our Story

As many of you know Iain was diagnosed with Idiopathic Pulmonary Hypertension in 2004 after a regular visit to his pediatrician in Boulder, Jill Kamon. She had identified a loud second heart sound and concerned she referred him to Children’s Hospital Colorado where he was diagnosed and ultimately treated by Dr. Ivy’s team. Many children do not have that early diagnosis and we cannot thank enough Jill Kamon, Dr. Ivy, Michelle, Beth and so many more as they have given us Iain for the last 12 years. As most of you know those early years were a little on the stressful side as he was on IVFlolan. Later, he transitioned to Remodulin which gave us and him a break as it meant he could be away from us for more than half an hour. All good things come to an end and the therapies ran their course, Iain’s health has declined over the last eighteen months and now he is undergoing a life-saving lung transplant at the Children’s Hospital in St. Louis. 

We would like to use this forum as a method of communication about Iain’s journey.   In the early hours of Tuesday, January 17, 2017 donor lungs became available. We, the entire Hess family thank you for all of your love and support and will update you on the blog page when we can.

Due to the complexity of this type of surgery there are many reasons why Iain will not be able to receive gifts such as flowers, stuffed animals, balloons etc so instead please consider a donation. With the cost of a transplant often exceeding $500,000, many transplant families are unable to shoulder the financial burden of such a procedure. The Children’s Organ Transplant Association (COTA) is a national charity dedicated to organizing and guiding communities in raising funds for transplant-related expenses.